The day after I wrote my previous blog post I managed to nap except, not really. I remained semi-conscious during the entire thing. Though I think I was asleep, too, because if I was awake then I would be more cognizant of time, right? What I mean was that while I was conscious I was trying to sleep but I was not necessarily lying there ticking away the minutes. It was a weird feeling, blatantly aware I was napping and actually doing it, both at the same time.
I can’t say I didn’t rest, though. While I didn’t feel energized afterward, I didn’t wake up groggy like I usually do. Weird feelings.
I experienced these episodes another couple of days but since yesterday, I’ve completely zonked out during my daily naps. I am not sure what changed. Maybe I was tired enough now that I’m napping later in the day. Maybe, there was too much going on in my head to properly power down before. Whatever the reason, I’m finally back on track. Now, I just have to tackle the fatigue that grows with every day.
Hi, my name is Monica and I have RA.
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For the past five years (at least), I’ve made a conscious effort to nap and rest more, as my body needed it. It’s hard to say why but if I don’t get my midday nap in I am totally gone by 5 or 6pm.
I made a resolution to not be so hard on myself when I did need a break. You can see my 2020 resolutions post here. And I have been really good to myself, in that respect. I look forward to my rest and embrace the nap…every day!
But, for the last week or so, I haven’t been able to fall asleep. When I am doing well, disease-wise, I don’t need to rest during the day but right now I wake up feeling lethargic. I feel the lure to lay down but once I’m horizontal I cannot fall asleep!
My mind races a mile a minute and I can’t calm it. I feel worried but I am not sure why I feel that way.
I’ve gotten pretty good at managing my stress and one technique is to identify what is bothering me. However, right now, I can’t put a finger on the reason.
Marmalade is stable (she has severe kidney disease), Mocha is doing well behaviorally, and Affie/Sunsilk are living like champions. Work is going well, I feel financially secure and my relationships are strong. So, what is it?
February was hard because Marmalade was not well and Sunsilk lost her sight suddenly (it has since returned) but I never felt particularly overwhelmed during that time.
Can it be a delayed reaction to that previous stress? Maybe I was running on adrenaline for a few weeks and now that I have a chance to breathe my body is just spent.
I don’t want to get into a bad habit, though. I am dragging by late afternoon and cannot get anything done after 3pm. I don’t want this to be a new normal where I spend the entire day in a zombie state.
Hopefully, like Rheumatoid Arthritis flares, this fatigue will pass. Fingers crossed because I cannot go on like this!
Hi, my name is Monica and I have RA.
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Why is it whenever I think about circles I immediately jump to the 1985 song “You Spin Me Round (Like a Record)”?
Storytime: My first encounter with this song was actually a vacuum commercial that aired during I Love Lucy re-runs!
What has me thinking about circles? This endless loop of fatigue and insomnia. How are those related? If I am so exhausted shouldn’t I sleep more soundly at night? If only life was that easy! I tend to suffer more insomnia the more flared I am.
Whenever I switched medications I suffered from bouts of insomnia. I would flare up during the periods when the old biologic wore off and the new one had yet to kick in. I became less physically active and found it more difficult to fall asleep at night. I eliminated the more physical activities like climbing, or shopping in actual stores. Errand were spread out over days and I spent most of my time laying down and resting. I was just too flared (from pain or fatigue) to keep them in my daily routine.
When I was in a good place with my medications (especially while on the Orencia) I was more active, happier, “healthier” and as a result, slept better. I climbed, I shopped, I lived! As a result, my sleep hygiene was fantastic.
If you read my recent post detailing my “progress” on Actemra, this month, you will remember as the medication wore off, so did my energy levels. I was uncharacteristically tired, run down and list-less (like the I Love Lucy reference?)
All I wanted to do during the day was take naps. I wanted to lay down on my bed and stay there. By the evening, I was so exhausted I wanted to go to bed early and I fell asleep quickly. Until a few minutes later when I was just as awake as though it was morning. Cue the insomnia. If I was so exhausted shouldn’t I sleep better??
I spent a long time thinking about this (as seconds blinked by and minutes turned into hours) and I realized this made perfect sense.
When my medications work I have energy. I work, I climb, I go out with friends, I play with my dog, and I chase my cats. I am happier, healthier, and more active.
Research shows that the less the body “exercises”, both physically and mentally, the less likely it will obtain a good night’s rest. Activity stimulates the body and tires it. When your brain and body feel fatigued, it is easier for them to fall into the natural sleep cycle and stay there.
The lack of response to the new Actemra infusion means I am less physically active. Okay, so, work your brain, Monica! This makes me sound somewhat like a moron, doesn’t it? Don’t get me wrong, I read, I love reading; I do my Sudoku, I secretly love crosswords, I blog, I color, I paint my nails, I craft…but that only takes me so far. These activities do not tire my body.
You know when you’re so physically exhausted you lay down and pass out? You’re asleep the minute your head hits the pillow. Your body slows down the internal processes and you recharge.
I am not getting that. My body is at rest all day. I generally sit or recline while I do all of the above activities. As far as my body knows I am already recharging. When I get to bedtime my body does not think I need anymore rest so I toss and turn most of the night.
What a blasted cycle, huh?
And, because this music video is hilarious…I give you the 80’s hit:
I never updated on my second infusion, did I? My main goal, with these posts, is to archive my progress while on Actemra. This is for my own personal benefit and for those who are considering this medication. Except for the brand’s website there is very little information available. I sometimes feel like I am running blind.
But, first…
A quick review of the first infusion. I handled it well. I experienced no pain, dizziness or fainting during the treatment. I felt slightly nauseous but assumed I needed to adjust to the new medication.
Unfortunately, it was more than a little first reaction. The nausea got worse. I could not keep anything down, including water, for three days! The intensity subsided but I was still nauseous for a week. Stomach upset and ulcers are side effects of Actemra but are also side effects of other TNF inhibitors and thiis was the first time I reacted so poorly to a biologic.
I had a history of medication-induced ulcers and chronic inflammation of my stomach lining and duodenum. At the time, my doctors prescribed Reglan. As long as I maintained my insanely strict diet, Reglan maintained my nausea. After my ulcers healed and I received the all clear to return to my normal diet I kept a couple of these pills on me at all times. I rarely needed them but they were effective.
Fast forward to Actemra: Reglan did absolutely nothing. It actually made the cramping worse. My rheumatologist contacted my gastroenterologist and she suggested Zofran.
Story time: Saachi was prescribed Zofran 8mg tablets, as needed for nausea, during her chemotherapy. After she passed away, I donated the remaining pills back to the hospital. This was literally one month before I, myself, was prescribed the exact same medication! While my rheumatologist frowned upon taking “animal pills” I personally had no problem with this. Working at a vet clinic I knew these were good human-grade generic medications. It doesn’t really matter now but I just thought it was funny!
Zofran was a stronger anti-nausea I took 2-3 hours before the infusion. It made me groggy so my father drove me (best dad ever) to the appointment.
When Saachi took this medication she drooled and drooled and drooled and lapped up water like it was her only job in life. I now know why: Zofran tastes disgusting. It is a quick-dissolve tablet I place under my tongue. BLEARGH!
Now onto the second dose…
I tolerated the IV well. I was not nauseous during the infusion or even afterwards! I alternated between the Zofran and Reglan for intermittent stomach upset but the nausea was nothing compared to the previous month.
Where am I now?
I am three weeks post-infusion and I am beyond fatigued. I am past exhausted. I became noticeably more tired last week. I slept more deeply during my naps. Usually, I lay down, close my eyes and rest. I am more or less conscious. Lately, I’ve been out like a lightbulb. I also cannot wake up in the mornings. I am not a morning person, but, when I have to, I wake up early and respond well to my alarm(s). Now, I snooze for at least 15 minutes and over the last few days I overslept by an hour and a half (Thanks, pets, for not waking me up)!
I am only two months into this new medication but this is not cool. Just the idea of being awake makes me more tired. Is this how I am going to feel for four more months until I know the full effect of this medication? This is a really unfortunate way to start the summer!
I stopped the Orencia infusion two months ago. The good news: I was not in a lot of pain and I was on a stable prednisone dose; the bad news: I was uncharacteristically tired. Over the last three weeks, I only spent about nine hours awake per day. Nine hours. That is a fourth of a day. I wasted away the last three weeks of my life because even when I was awake I so was tired and groggy I barely got anything done. Driving to the grocery store required a nap; not to mention getting the groceries and carrying them put me over the edge. I love naps. When I nap I naturally wake up after an hour and a half. Lately, I slept five hours straight. That is not natural.
If I was not asleep, I lay in bed barely capable of anything. I could not break this fatigue. I knew it was because of a flare but I was not in any pain so I did not feel it. My inner demons wondered if I was just lazy since I was on “vacation”. But, if you know me personally, you know I like to keep busy and I feel guilty when I am not. Breaks are not in my vocabulary. For the last three weeks I’ve beaten myself up even though the logical part of me knows it was not my fault.
Fatigue is a funny symptom. It is also the most debilitating one. I become so run-down and incapable of normal function. Fatigue is a result of many different thing: overwork, infection, or recovery, to name a few. But, once it hits, I have no other choice but to wait it out. I cannot prevent it nor can I treat it.
Extreme fatigue exists with every condition. Endless money, resources and time go into researching the newest medications but rarely goes into fatigue itself. If I could just control this weariness I could resolve a lot issues. I can manage the pain (with medication), I can deal with the nausea (again, with medication), and I can deal with the immobility (you guessed it, with medication) and none of these carry a candle to the exhaustion. There is no magic pill I can swallow so I have to ride out the storm.
The argument behind the research is if I control symptoms my body would not feel tired from attacking itself. If I control the disease, the fatigue will resolve itself.
Maybe fatigue isn’t a symptom after all, maybe it is a side effect.
Chronic fatigue is one of the most unfortunate parts of Rheumatoid Disease. It is not only a symptom of the disease but a side-effect of the medications.
I was one of 1,954 people with Rheumatoid Arthritis who completed National Rheumatoid Arthritis Society’s survey on the impact of chronic fatigue for those living with RA. Although I mainly use the term ‘Rheumatoid Disease’ now rather than ‘Rheumatoid Arthritis’, in this context I’ll use RA. It’s no surprise that 83% of survey respondents ‘felt that the public is not at all aware of the impact that chronic fatigue has on people’s lives’. I think the general public get confused between RA and Osteoarthritis (OA) and find it hard to understand the full implications of living with an invisible illness. I think this is partly due to how the media covers rheumatoid arthritis and because fewer people have RA than OA. (According to Arthritis Research UK, 8.75 million people (in the UK) have sought treatment for osteoarthritis). In contrast, according to NRAS, around 690,000 people in the UK have RA…
The day after I wrote my previous blog post I managed to nap except, not really. I remained semi-conscious during the entire thing. Though I think I was asleep, too, because if I was awake then I would be more cognizant of time, right? What I mean was that while I was conscious I was trying to sleep but I was not necessarily lying there ticking away the minutes. It was a weird feeling, blatantly aware I was napping and actually doing it, both at the same time.
